GeneWatch UK today accused the Government of pushing ahead with plans for the
controversial £60 million genetic research project Biobank UK (1), without
a proper independent review of the science, value-for-money or necessary safeguards
for the public. A decision on the project is expected later this month, by review
panels at the Medical Research Council and the Wellcome Trust , who will consider
the scientific protocol and peer reviewers comments (2).

"Fundamental questions have been widely raised about the scientific validity
and purpose of the biobank," said Dr Helen Wallace, "Scientific peer
review of the MRCs pet project should not be an inside job. Peer reviewers
for such a controversial project should not be chosen solely by those advocating
it. Nor should their comments be considered secretly behind closed doors."

GeneWatch called for:

the projects scientific peer review to be run by a body independent
of the Medical Research Council (MRC), Wellcome Trust or Department of Health
(who are the major backers of the project);

an assessment of the projects value-for-money to be made by an independent
body;

a debate in the House of Commons to review the ethical issues and need for
legal safeguards.

GeneWatch UK is concerned about both the scientific validity of the project
and the lack of safeguards to protect the public from the misuse of genetic
information, and has twice called for the project to be shelved whilst these
issues are resolved (3). The proposed research has been criticised by many scientists
as poorly designed and based on simplistic assumptions (4). GeneWatch UK believes
that the proposed scientific protocol (5) is hopelessly inadequate and could
lead to spurious links being identified between genes and diseases.

The Wellcome Trust is holding a consultation workshop on the ethics of BioBank
UK on 25 April. However, the consultation side-steps the key design changes
and safeguards needed to ensure this type of research is beneficial and not
harmful to peoples health.

A major concern expressed by the public in recent workshops on the proposal
was the "unclear benefits to individuals and society"(6). A key aim
of BioBank UK is to develop genetic tests to predict future disease, with a
view to giving medicines to healthy people before they get the predicted illness
(7). This approach to disease prevention is of doubtful scientific validity
and dubious benefit to health. Genetic test results could also be misused by
others, such as insurers or employers.

"Ministers are in danger of falling for their own genetic hype in believing
common diseases can be predicted from your genes," said Dr Wallace, "The
growing epidemic of obesity, for example, is not caused by an increase in obesity
genes, but by poor diets and lack of exercise."

Although the Government has promised to address concerns (8), the necessary
legal safeguards have not been put in place to protect the public from future
misuse of genetic information, and the study design has not been reconsidered
in the light of serious scientific criticisms.

Contact:

Dr Helen Wallace: 01298-871898 or mobile: 07903-311584.

Notes for Editors:

Biobank UK is being developed jointly by the Medical Research Council (MRC),
the Wellcome Trust (http://www.wellcome.ac.uk/en/1/biovenpop.html) and the
Department of Health. The plan involves collecting half a million blood samples
from volunteers aged 45 to 69, beginning with some pilot studies towards the
end of 2002. The idea of making NHS patient information and linked genetic
data available to the pharmaceutical industry was originally proposed by the
former chief scientist of SmithKline Beecham, George Poste in 1999, and funding
was allocated in principle to the Biobank project by the MRC and Wellcome
Trust in June 1999. A smaller sum has been allocated by the Department of
Health. The biobank is seen by the government as a first step to a national
genetic database, including all NHS patients.

See - www.biobank.ac.uk . At the Wellcome Trust, the review panels
recommendations will be considered by the Trusts governors later in
the year.

"Protocol for BioBank UK: A Study of Genes, Environment and Health",
The Wellcome Trust/Medical Research Council and Department of Health, February
2002.

"BioBank UK: A Question of Trust: A Consultation Exploring and Addressing
Questions of Public Trust", Report prepared for the Medical Research
Council and Wellcome Trust by People Science and Policy Ltd, March 2002.

The MRCs view on the need for the project is outlined here.

Speech by Rt Hon Alan Milburn MP, Secretary of State for Health at the
international conference Genetics and Health - a Decade of Opportunity,16
January 2002. Available on http://www.doh.gov.uk/speeches/jan2002milburngenetics.htm